I’ve just finished reading In a Different Key, a book by John Donvan and Caren Zucker subtitled “The Story of Autism.” It’s the most comprehensive, in-depth, even-handed history of autism I’ve read so far.
Published in 2016, the book begins with the first formal diagnosis—back in 1942, Leo Kanner’s “Case 1”—and proceeds through the various wrong-headed theories (“refrigerator mothers”; normal children “locked inside”; post-natal, vaccine-induced “brain injuries”) and wrong-headed approaches (institutionalization; psychotherapy; behavioral modification through cattle prods); to the panic about a growing autism epidemic as the diagnostic criteria shift and as the reported rates increase from an original estimate of 1 in 4,000 to a rate of 1 in 66 at the time of publication. (We’re now at 1 in 59).
The book ends with two recent developments. One is the elimination of the Asperger’s diagnosis and reanalysis of autism as a unitary spectrum disorder whose span runs from individuals who are completely non-verbal and socially disengaged all the way to individuals who are highly fluent and articulate and socially active but odd. The other recent development is the Neurodiversity Movement, populated by individuals at the latter end of the spectrum, many of them self-styled spokespeople for everyone else on the spectrum. This movement recasts autism as a neurological identity for which cures—and even treatments–are inappropriate and unethical.
Some of the same territory is covered by Steve Silberman’s Neurotribes, which came out a year earlier. But four grim topics are addressed only in In a Different Key. First is the history of institutionalization—complete with gruesome images and a quote from Alfred Maisel (author of “Bedlam 1946”) characterizing institutions as “concentration camps that masquerade as hospitals.” The second is an equally vivid treatment of the realities of the more extreme cases of autism, including the self-injurious behaviors and the trials endured by family members. The third is the collaboration by Hans Asperger (credited with discovering the subtype of autism that bears his name) with the Nazis. And the fourth is the sordid history of the pseudoscience of Facilitated Communication—how it facilitated not just a huge corpus of bogus messages (and poems and philosophical musings and “auto”-biographies) attributed to non-speaking autistic people, but also a bevy of bogus allegations of sexual abuse, not to mention a bogus redefinition of autism as a motor disorder.
Two other topics are refreshingly absent from In a Different Key. One is the retrospective diagnosis of historical individuals–seen, for example, in Neurotribes’ chapter on the 18th century English scientist Henry Cavendish. Proper diagnosis, of course, is based on direct observation, parent surveys, and standardized, in-person assessment tools. The other is a presentation of autism as a culture akin to Deaf culture—with its own “language”, its own social life and social conventions, and its own spokespeople. This takes us back to the Neurodiversity Movement, whose verbal, adult leaders are championed in Neurotribes as individuals who can serve as “translators” for nonverbal autistic children—but whose credentials as representatives of the autistic population are, arguably, highly tenuous. While it’s nice that In a Different Key rejects such nonsense, it’s easy to see the temptation to include it. I well remember how fervently I wanted to believe that my young son would become the next Alan Turing—and that he’d find a whole community of Alan Turings to interactive with.
While the book makes a convincing case that shifting diagnostic criteria and growing awareness account for much of the apparent increase in autism rates, there are a couple of additional possibilities it doesn’t consider. Even if you’re convinced, as I am, that the condition develops in utero—that it is something that kids are born with—it’s possible that one or more external factors is nudging autism rates upwards. Possible culprits include viruses or chemicals that cross the placenta and that have become more prevalent; growing numbers of older parents (older dads in particular have been implicated); and increases in preterm births and in the numbers of preemies who survive.
Finally, while In a Different Key, minus the end notes, contains over 550 very substantive pages, there are a couple of subjects it might have explored further. One pertains to the numerous empirical findings about linguistic, social, and cognitive idiosyncrasies in autism. There’s some discussion of auditory (vs. visual) deficits and of the perspective-taking deficits evinced in the Sally Ann experiments, but nothing about the possibility of much broader deficits in central coherence (Uta Frith, et al) or in complex information processing (Nancy Minshew, et al)—two very interesting and highly explanatory theories of autism that have significant empirical backing. The other subject that deserves further exploration is the alarming resurgence of Facilitated Communication—along with the insidious spread of its more recent incarnation, Rapid Prompting. As I found during my NSF interviews, an alarmingly large proportion of parents, finding the standard therapies ineffective, are resorting to the charlatans. These families desperately need better options.
 Donvan (as Neurotribes author Steve Silberman has lamented) was given exclusive access to the recent research done by Herwig Czech that unearthed this collaboration; the documents Czech’s research was based on were publicly available, and indeed there had already been some discussion of these revelations in the German research community.
 Some of them display no obvious symptoms of autism during impromptu interviews on Youtube (cf this and this); many are proponents of self-diagnosis. Given the standing in the autism world brought by the autism mantle, it’s reasonable to wonder whether some of these people are truly on the spectrum. In a Different Key sounds a skeptical note—though the authors end up providing us with an eye-witness account suggesting that Ari Ne’eman, cofounder of the Autism Self Advocacy Network, truly does have Asperger’s.